Life after Fostamatinib trial

Rob..Interesting you should mention that. I spent time at work last night researching adrenal insufficiency and have a couple of very mild symptoms. I will be raising the desire for a cortisol level check at my next clinic visit.

I taper so slowly it's unbelievable . I have no problem with being on 5mg a day & it's below the level for affecting my osteoporosis but I haven't had a decent night's sleep since I started the wretched drug nearly 2 years ago. That is why want to get off it.

I read that there is a special cortisol test for if you are taking prednisone: the regular test apparently measures prednisone plus cortisol.

www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/8545

Excellent article on this topic. Follow the link, but here is an exerpt:

www.nadf.us/adrenal-diseases/secondary-adrenal-insufficiency/
Those with permanent secondary adrenal insufficiency need replacement for the rest of their lives. The management of those who have developed secondary adrenal insufficiency from prolonged use of steroid therapy presents a challenge. Once glucocorticoids have been tapered to below 5 mg of prednisone, dosing for stress such as illness or surgery is still needed until there is full recovery of adrenal reserve, typically using a guide of one month for each month that steroids had been used. The most difficult issue is that symptoms of adrenal insufficiency will be present during the tapering phase, because low levels of cortisol are the only trigger to the pituitary to stimulate the return of ACTH production and the restoration of normal pituitary-adrenal responsiveness. The longer high dose steroids were given for a disease like asthma, rheumatoid arthritis, polymyalgia rheumatica or inflammatory bowel disease, the more likely that individual will suffer from adrenal insufficiency symptoms on withdrawal of the steroids. In addition, tapering off the steroids may cause a relapse of the disease that had been treated, causing a combination of disease symptoms overlapping with adrenal insufficiency symptoms. That is why it is very common for steroid tapers to be aborted, with a temporary return to therapeutic doses of glucocorticoids, followed by a slow attempt at tapering if the primary disease is in remission.

From the rest of it I gleaned that you really should be working with an endocrinologist.

Thank you for that Rob. A very interesting read. Will definitely be discussing this at next appointment.

Still on 150 mcg of Nplate and down to 4mg/day of prednisolone. Count now 50 which is smack on target.
Back to clinic in 2 weeks.

As a point of interest the other person who was on the Fostamatinib trail with me is doing really well on it. She's had ITP for years and had every treatment going over the years including a splenectomy. Now she has a decent count. So glad it works for her but also a little bit jealous too.

Don't be jealous! You're doing great with another treatment!

only a weeny bit jealous